We are autism parents, and there is hope

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We are autism parents, and there is hope

By Tim­o­thy & Jean Imholt

We are autism par­ents. Autism itself was the sub­ject of tele­vi­sion com­mer­cials until our son, Emmit, was diag­nosed at two years old. The mere men­tion of the word brought on fear, doubt, dis­tress, anger, guilt, and denial all at the same time! In ret­ro­spect this was under­stand­able given that we didn’t have an inkling what that meant at the time. Fast for­ward to today, when Emmit is four and a half, we are much more edu­cated on the sub­ject and live every sin­gle day of our lives with the lit­tle dude who forced us to learn about it, and we no longer con­sider it a two headed, fire breath­ing monster.

The diag­no­sis came about because of our crack­er­jack pedi­a­tri­cian. At his eigh­teen month checkup he asked us a series of ques­tions about Emmit’s day to day life. The lit­tle dude had very few words, he had very poor eye con­tact and didn’t appear to really enjoy social inter­ac­tion with his peers; in fact, inter­ac­tion with other kids seemed to stress him out.

Our son’s pedi­a­tri­cian referred us to a neu­ro­log­i­cal con­sul­tant, and ulti­mately a neu­ropsy­chol­o­gist at Children’s Hos­pi­tal in Boston, Mass­a­chu­setts diag­nosed him with the autism spec­trum dis­or­der. Because of his age at the time of diag­no­sis it was almost impos­si­ble to tell exactly where on the spec­trum he fell. If you are not famil­iar with the spec­trum, never fear, you are not alone. It is a wide range of diag­no­sis (we don’t care for dis­or­ders as a descrip­tor). The range goes from mild to severe. It was obvi­ous he wasn’t severe, but real­iz­ing that he was on the spec­trum at all was a giant leap for­ward for us in our path to under­stand­ing how to help him.

The diag­no­sis was just the begin­ning. If you are ever faced with this sit­u­a­tion you will learn that a whole lot of stuff comes imme­di­ately fol­low­ing learn­ing that lit­tle tid­bit of infor­ma­tion. Then the bom­bard­ment really begins. There are a ton of ther­a­pies that he needed to be in start­ing right away. These included speech ther­apy, applied behav­ioral analy­sis (ABA) ther­apy, and maybe even occu­pa­tional ther­apy (OT) for his sen­sory pro­cess­ing inte­gra­tion challenges.

Now, Tim works full time and luck­ily we are in a posi­tion where Jean can be a full time mom. Her head was def­i­nitely spin­ning, his head was all fuzzy from the entire thing. She spent a week griev­ing, then by the week­end, rolled up her sleeves and got to work. There was a col­lec­tive vow that we would get Emmit all of the resources we could to get him ready for the chal­lenges that life throws at all of us. Around this time we also found out that Tim was diag­nosed with vir­tu­ally the same spec­trum dis­or­der as a tod­dler but was never told for a vari­ety of rea­sons, just to add fuel to our fire. It was the dou­ble whammy of a life­time. That is an entirely dif­fer­ent sub­ject and a topic for another day.

Back to Emmit. Shortly after his diag­no­sis he started receiv­ing many ser­vices through a fan­tas­tic State funded early inter­ven­tion pro­gram. This pro­gram pro­vides speech ther­apy using floor time, music ther­apy (which helps far more than you would think at first blush), OT, and once a week he had a social play date, some­thing that is vital for kids (and adults actu­ally, but the nomen­cla­ture should change) on the spec­trum. Jean imme­di­ately sought out other play groups in the neigh­bor­hood and through the local church. We also put him in a day­care a cou­ple of days a week. If it sounds like a busy sched­ule and yes it was. How­ever it is cru­cial to expose kids like Emmit to as many socially inter­ac­tive groups as pos­si­ble and it has to be done very early on.

As Emmit turned 3 all of the State funded ther­a­pies came to an end. That is because among other rea­sons, he was then eli­gi­ble to go to a peer model, inte­grated preschool. Unfor­tu­nately, or for­tu­nately depend­ing on your per­spec­tive, you have to go through a long, drawn out process of get­ting what is referred to as an indi­vid­u­al­ized edu­ca­tion plan or IEP. This is basi­cally a con­tract, or arrange­ment for get­ting Emmit into a preschool pro­gram, and what kind of spe­cial coursework/​treatment he will get while he is there.

As he began attend­ing school we started to see Emmit vocal­iz­ing more, request­ing his needs with words, and play­ing with his sib­lings more and more. On top of all of that suc­cess, he learned other new skills, such as dress­ing him­self, and potty train­ing just to name a few. He loved and thrived under the rou­tine of attend­ing school, and his favorite part, rid­ing the school bus.

Ear­lier this year Emmit turned four. By this point he was able to request what he wanted on his birth­day cake! He went with Min­ions from Despi­ca­ble Me (a great movie for kids and adults). We got him the cake he wanted and a fan­tas­tic party with his class­mates in a gym­nas­tics stu­dio near where we live.

Over time, like most kids, he has been invited to a large num­ber of birth­day par­ties. For a child with autism, these can be night­mares. Emmit has thrived so much that he now loves these types of things. There was one just this past week­end where Tim and Jean were both floored when Emmit took the time to say hello to his friends by their name. On one occa­sion he even struck up a conversation.

Jimmy, do you like to swim?” asked Emmit.

Whoa wait a minute! Was that Emmit? Yes, yes, it was. Emmit got his answer, which made him smile.

Yes.” said Jimmy.

Four year old Emmit wasn’t done.

I went to the swim class today. I had four float­ies,” said Emmit.

Just as a side note, just before the party Emmit had a swim class and had worn a belt with four lay­ers of flota­tion foam. Jean was almost in tears when she heard this, because he had made so much progress in such a short period of time.

Ear­lier in the year, we added ABA ther­apy back into the mix (the state funded ver­sion had ended by this point). This was in addi­tion to the speech ther­apy that he receives at school as per his IEP. We did this pri­vately because he was found inel­i­gi­ble to receive ABA through school because he is not “severe enough” despite the rec­om­men­da­tions of his doc­tors. ABA is known to be amaz­ingly effec­tive for chil­dren on the spec­trum. It is specif­i­cally tar­geted to mod­ify unde­sired behav­iors through pos­i­tive moti­va­tion and rewards.

Here was the kicker. With all of the new insur­ance laws in place (the Afford­able Care Act), we learned that this invalu­able ser­vice for Emmit would not be cov­ered by our insur­ance in any way. Two doors were shut in our face. First through the school, the sec­ond through insur­ance. Just slam, right on the nose. This was really sur­pris­ing, espe­cially the insur­ance cov­er­age part, con­sid­er­ing how much we have heard about improve­ments in this area thanks to new laws. We also found out that prior to the ACA many insur­ance poli­cies (includ­ing ours) cov­ered this type of therapy.

We were well aware that time was of the essence. If we were going to give Emmit this type of ther­apy, the ear­lier we start, the bet­ter the out­come. We decided right then and there to self-​fund his treat­ment 100% out of pocket. It is shock­ingly expen­sive, but the hope was that Emmit would make great progress quickly, so this wouldn’t be a years-​long effort. We are see­ing the fruits of his hard work with the ABA ther­a­pists every sin­gle day. He has learned to share, take turns, a ton of func­tional lan­guage (my tummy hurts, etc), he fol­lows multi-​step instruc­tions, he is tol­er­at­ing unde­sired activ­i­ties (to a four year old this is a lot of stuff), he is becom­ing more flex­i­ble, but most impor­tantly, he is now con­fi­dent in him­self (enough to approach some­one out­side of fam­ily and ask questions.)

The term autism is no longer scary to us. To be hon­est, the term autism par­ent is not some­thing we really used before today. Part of us has been fright­ened all along, like by say­ing it out loud, it would become etched in gran­ite. Now with our newly instilled hope, we are proud to have put all of this in writ­ing. In fact, autism par­ents should be proud of them­selves and should be cel­e­brated. We recently read (more like devoured) a book enti­tled “Ten Things Every Child with Autism Wishes You Knew” which is very much a par­a­digm shift­ing book. One of the many things from that book we found of high value is how the term “autis­tic child” can con­jure up the neg­a­tive con­no­ta­tion and put a severe judg­ment and limit to the child’s abil­i­ties in our soci­ety (using “autis­tic” in front of child as an adjec­tive). We as a soci­ety needs to work towards elim­i­nat­ing igno­rance on the sub­ject of autism. How­ever in this case, we are of the opin­ion that “autism par­ent” con­jures up some­thing much dif­fer­ent than the pre­vi­ous per­cep­tion – per­se­ver­ance, patience, super-​mom/​dad, expert and advocate.

This sub­ject is one that more peo­ple should be aware of, if for no other rea­son than some of the peo­ple that fall on the spec­trum are some of the best and bright­est Amer­ica has to offer, merely socially awk­ward. That, how­ever, does not mean they are to be ignored as is all too often the case. We should help as many of them com­mu­ni­cate with every­one else, because quite frankly, given the state of affairs we find our­selves in as a nation per­haps “nor­mal” is not some­thing we should strive for. We need to strive for better.

Jean is a first gen­er­a­tion Korean immi­grant, and a grad­u­ate of Vir­ginia Tech with a Mas­ters in Chem­i­cal Engi­neer­ing, and a for­mer Pro­gram Man­ager in the Defense Indus­try. Tim is an army vet­eran, Physi­cist and author of sev­eral books includ­ing The For­est of Assas­sins avail­able on Ama​zon​.com in print and kin­dle ver­sions, with audio­book ver­sion com­ing soon.

By Timothy & Jean Imholt

 

We are autism parents. Autism itself was the subject of television commercials until our son, Emmit, was diagnosed at two years old. The mere mention of the word brought on fear, doubt, distress, anger, guilt, and denial all at the same time! In retrospect this was understandable given that we didn’t have an inkling what that meant at the time. Fast forward to today, when Emmit is four and a half, we are much more educated on the subject and live every single day of our lives with the little dude who forced us to learn about it, and we no longer consider it a two headed, fire breathing monster.

The diagnosis came about because of our crackerjack pediatrician. At his eighteen month checkup he asked us a series of questions about Emmit’s day to day life. The little dude had very few words, he had very poor eye contact and didn’t appear to really enjoy social interaction with his peers; in fact, interaction with other kids seemed to stress him out.

Our son’s pediatrician referred us to a neurological consultant, and ultimately a neuropsychologist at Children’s Hospital in Boston, Massachusetts diagnosed him with the autism spectrum disorder. Because of his age at the time of diagnosis it was almost impossible to tell exactly where on the spectrum he fell. If you are not familiar with the spectrum, never fear, you are not alone. It is a wide range of diagnosis (we don’t care for disorders as a descriptor). The range goes from mild to severe. It was obvious he wasn’t severe, but realizing that he was on the spectrum at all was a giant leap forward for us in our path to understanding how to help him.

The diagnosis was just the beginning. If you are ever faced with this situation you will learn that a whole lot of stuff comes immediately following learning that little tidbit of information. Then the bombardment really begins. There are a ton of therapies that he needed to be in starting right away. These included speech therapy, applied behavioral analysis (ABA) therapy, and maybe even occupational therapy (OT) for his sensory processing integration challenges.

Now, Tim works full time and luckily we are in a position where Jean can be a full time mom. Her head was definitely spinning, his head was all fuzzy from the entire thing. She spent a week grieving, then by the weekend, rolled up her sleeves and got to work. There was a collective vow that we would get Emmit all of the resources we could to get him ready for the challenges that life throws at all of us. Around this time we also found out that Tim was diagnosed with virtually the same spectrum disorder as a toddler but was never told for a variety of reasons, just to add fuel to our fire. It was the double whammy of a lifetime. That is an entirely different subject and a topic for another day.

Back to Emmit. Shortly after his diagnosis he started receiving many services through a fantastic State funded early intervention program. This program provides speech therapy using floor time, music therapy (which helps far more than you would think at first blush), OT, and once a week he had a social play date, something that is vital for kids (and adults actually, but the nomenclature should change) on the spectrum. Jean immediately sought out other play groups in the neighborhood and through the local church. We also put him in a daycare a couple of days a week. If it sounds like a busy schedule and yes it was. However it is crucial to expose kids like Emmit to as many socially interactive groups as possible and it has to be done very early on.

As Emmit turned 3 all of the State funded therapies came to an end. That is because among other reasons, he was then eligible to go to a peer model, integrated preschool. Unfortunately, or fortunately depending on your perspective, you have to go through a long, drawn out process of getting what is referred to as an individualized education plan or IEP. This is basically a contract, or arrangement for getting Emmit into a preschool program, and what kind of special coursework/treatment he will get while he is there.

As he began attending school we started to see Emmit vocalizing more, requesting his needs with words, and playing with his siblings more and more. On top of all of that success, he learned other new skills, such as dressing himself, and potty training just to name a few. He loved and thrived under the routine of attending school, and his favorite part, riding the school bus.

Earlier this year Emmit turned four. By this point he was able to request what he wanted on his birthday cake! He went with Minions from Despicable Me (a great movie for kids and adults). We got him the cake he wanted and a fantastic party with his classmates in a gymnastics studio near where we live.

Over time, like most kids, he has been invited to a large number of birthday parties. For a child with autism, these can be nightmares. Emmit has thrived so much that he now loves these types of things. There was one just this past weekend where Tim and Jean were both floored when Emmit took the time to say hello to his friends by their name. On one occasion he even struck up a conversation.

“Jimmy, do you like to swim?” asked Emmit.

Whoa wait a minute! Was that Emmit? Yes, yes, it was. Emmit got his answer, which made him smile.

“Yes.” said Jimmy.

Four year old Emmit wasn’t done.

“I went to the swim class today.  I had four floaties,” said Emmit.

Just as a side note, just before the party Emmit had a swim class and had worn a belt with four layers of flotation foam. Jean was almost in tears when she heard this, because he had made so much progress in such a short period of time.

Earlier in the year, we added ABA therapy back into the mix (the state funded version had ended by this point). This was in addition to the speech therapy that he receives at school as per his IEP. We did this privately because he was found ineligible to receive ABA through school because he is not “severe enough” despite the recommendations of his doctors. ABA is known to be amazingly effective for children on the spectrum. It is specifically targeted to modify undesired behaviors through positive motivation and rewards.

Here was the kicker.  With all of the new insurance laws in place (the Affordable Care Act), we learned that this invaluable service for Emmit would not be covered by our insurance in any way. Two doors were shut in our face. First through the school, the second through insurance. Just slam, right on the nose. This was really surprising, especially the insurance coverage part, considering how much we have heard about improvements in this area thanks to new laws. We also found out that prior to the ACA many insurance policies (including ours) covered this type of therapy.

We were well aware that time was of the essence. If we were going to give Emmit this type of therapy, the earlier we start, the better the outcome. We decided right then and there to self-fund his treatment 100% out of pocket. It is shockingly expensive, but the hope was that Emmit would make great progress quickly, so this wouldn’t be a years-long effort. We are seeing the fruits of his hard work with the ABA therapists every single day. He has learned to share, take turns, a ton of functional language (my tummy hurts, etc), he follows multi-step instructions, he is tolerating undesired activities (to a four year old this is a lot of stuff), he is becoming more flexible, but most importantly, he is now confident in himself (enough to approach someone outside of family and ask questions.)

The term autism is no longer scary to us. To be honest, the term autism parent is not something we really used before today. Part of us has been frightened all along, like by saying it out loud, it would become etched in granite. Now with our newly instilled hope, we are proud to have put all of this in writing. In fact, autism parents should be proud of themselves and should be celebrated. We recently read (more like devoured) a book entitled “Ten Things Every Child with Autism Wishes You Knew” which is very much a paradigm shifting book. One of the many things from that book we found of high value is how the term “autistic child” can conjure up the negative connotation and put a severe judgment and limit to the child’s abilities in our society (using “autistic” in front of child as an adjective).  We as a society needs to work towards eliminating ignorance on the subject of autism.  However in this case, we are of the opinion that “autism parent” conjures up something much different than the previous perception – perseverance, patience, super-mom/dad, expert and advocate.

This subject is one that more people should be aware of, if for no other reason than some of the people that fall on the spectrum are some of the best and brightest America has to offer, merely socially awkward. That, however, does not mean they are to be ignored as is all too often the case. We should help as many of them communicate with everyone else, because quite frankly, given the state of affairs we find ourselves in as a nation perhaps “normal” is not something we should strive for. We need to strive for better.

 

 

Jean is a first generation Korean immigrant, and a graduate of Virginia Tech with a Masters in Chemical Engineering, and a former Program Manager in the Defense Industry. Tim is an army veteran, Physicist and author of several books including The Forest of Assassins available on Amazon.com in print and kindle versions, with audiobook version coming soon.